How Lucky: A Novel Read online

  She then pounded her fists on the table, knocking over the picture of Dr. Gallagher’s wife and three fat children, and glared at him.

  “IS. HE. GOING. TO. BE. OK?” she screamed through her nostrils.

  What Asshead Ned said next is what drove my mother for the next twenty-five years. You could argue that her life was instantly divided between what happened before that, and what happened after. It gave her life purpose, and it ruined it at the same time. She was never the same.

  “Oh, I’m afraid this disease is terminal,” he said. “Daniel has Type 2 SMA. He will never walk. He will never be a regular boy. And you need to prepare yourself for the truth here: he could die at any moment. Even with proper, constant care, he is unlikely to live long enough to go to high school. You should appreciate every moment he has left. This is a terrible disease. I’m very sorry. It’s going to kill him.”

  My mother pursed her lips and swallowed. Dr. Gallagher put his hand on my mother’s shoulder, but she slapped it away. She didn’t cry. She didn’t pound the table again. She didn’t scream. She just pointed a thick, meaty finger at Asshead Ned and said, “You can go to your fucking meeting in Champaign now. I never want to see your goddamned face again. And I can tell you one thing: Danny’s going to outlive your pasty white ass. I can guarantee you that.”

  She then grabbed my car seat, sprinted out of the office, and cursed at him so loudly on the way out that patients came out of their rooms to see what the matter was. She stormed out of the hospital so fast that she crashed into the automatic doors.

  “Then I put Daniel in the car, got in, sat down, and cried for a week,” she says, capping off the story the same way every time. “Then I stopped. And haven’t cried since.”

  4.

  One of the many annoying things about being disabled is the obligation I always feel to make you feel better about your reactions to me.

  I’m used to your reactions. You’re the one with the problem here. While it’s exhausting to have to privilege your reactions, it’s even more exhausting, for me anyway, to constantly fight. So it’s just something I have to take on myself. It shouldn’t be asking too much for you to change, but apparently it is. So I try as much as I can. It’s not enough that I have to deal with this every day. Now I have to make you feel better about it.

  Anyway. It is not an accident that it has taken me this long to tell you about my SMA—one of the many reasons I prefer communicating with people through computers is that it allows me to stave off This Particular Conversation as long as possible—but don’t confuse that with the idea that I don’t enjoy answering questions about it. When you’re disabled, whether you have SMA or are a quadriplegic or just a dude or lady who uses a wheelchair, the reason you are disabled is, I have found, absolutely the last thing anyone wants to ask you about. They’ll ask you about the weather, or the local sports franchise, or today’s tempestuous political climate, but they never, ever ask you about that. You could be screaming, “Hey, if you press this button right here, this chair turns into a Corvette, please press the button, all you have to do is PRESS THIS BUTTON!” right in their face, and they would try to change the subject to a viral video they saw of a cat playing checkers.

  Take it from someone using the chair: people who do not use chairs do not like to talk about the chair. They are so worried about saying the wrong thing that they either don’t say anything at all or, more likely . . . they say the wrong thing. But that’s OK too! I like talking about the chair! I like it when people ask me how I’m feeling. I like it when people remember there’s a person in here.

  I get it. I know it’s strange for some of you to see someone in a wheelchair, someone who can’t move any of his extremities, someone who doesn’t seem to have control of any element of his body, right there in front of you. You’re not used to it, and you don’t know what to do. It takes a second just to take in what you’re looking at, to comprehend what a human body can be put through, and then it takes another second to process all the emotions you’re feeling, the sadness, the sympathy, oh, that sympathy, you poor thing, what kind of world do we live in when this could happen to a child, an innocent child, oh the inhumanity of it all, why is there suffering anyway? One learns pretty quick—when one’s whole life has been spent watching people try not to stare and still stare and then feel guilty about staring and then look away and act like it’s totally cool—how to catch those flashes of human emotion flickering across a new person’s face. It happens to every one of you, and, seriously, it’s OK. Well, it’s not OK, but I am used to it by now and have learned not to judge you. You don’t even realize you’ve done it until you’ve already done it. I get it: I can be a lot to process. You just want to walk down the street, maybe grab a beer and catch the end of the Falcons game, and then wham, you’re contemplating how unbearably cruel life on this planet can be and wondering how any sort of kind and caring God could possibly allow a person to suffer so profoundly. As I said: I get it.

  The point is that if we’re going to keep moving forward, if I’m going to get to keep talking to you like this—and I’d like to—we should probably deal with the SMA thing right now, head-on. I could give you a full dossier of the disease, what it is, how you get it, what it’s like, but I’m never going to be able to guess every question that you will have. So let’s just dispense with it right now. Ask me. Ask me whatever you want. Let’s get this over with. I am at your beck and call.

  Really?

  Really.

  Wait, you mean like this?

  Just like that. You’re getting the hang of this already. How are you enjoying sentience?

  It’s . . . strange. I hadn’t been expecting to be afforded this chance at life. I feel like Forky from Toy Story 4.

  Don’t get used to it. It’s a temporary condition. It’s just so you can ask some questions in a different font.

  OK. I mean, are you sure? I don’t want to upset you. Please let me know if I ask anything that offends you.

  Christ.

  All right. OK. So: You’re in a wheelchair? Have you always been in a wheelchair?

  Well, I didn’t come out of the womb in one. Once it became clear that I was never going to walk, I had to get around somehow. (Also, I’m not in a wheelchair. I use a wheelchair. It might not seem like a big difference to you, but it is to me.) My model is an Airride P801E KSP Italia. It can go really freaking fast: I had mine up to twenty miles per hour once. Scared the shit out of Mom, but it felt fantastic. Oh, here’s a tip, by the way: never tell someone using a wheelchair to slow down. We know what we’re doing. We use these things all day. You’re the one who should slow down. None of you people know how to drive.

  So that’s it? You can’t walk? SMA makes you unable to walk?

  SMA makes you unable to do a lot of things. Let’s start from the beginning. SMA is not like quadriplegia, like I snapped my neck or something. We have some similarities with those guys—our spines are screwed up, taking a crap is a massive ordeal—but theirs is usually a result of some sort of injury, where ours is a genetic disorder. Something happened to them to make them unable to move. We were just born this way.

  The key thing to remember about SMA is that it is progressive. It’s not something that happens to you and then just doesn’t heal. It’s something you have that will always get worse. If you broke your neck diving into a shallow pool, that’s terrible, but the challenge is accepting what has happened to you—what you can do moving forward, and what you can’t.

  That’s not what SMA is. Here’s the shorthand I use for what SMA is, to someone who has never heard of it. You know the Ice Bucket Challenge? Celebrities dumping water on their heads to raise money? Pretty great, right? That helped out a lot of people. That was for ALS, Lou Gehrig’s disease, which attacks an adult’s body from the inside, eventually devouring that body. Perfectly strong people, football players, firefighters, whatever, nerve cells in their brains stop sending nourishment to their muscles, and they stop being able to contro
l their muscles. You know all about how terrible it is. You poured the ice on your head and shared it to Facebook. I’m not going to make fun of you for it. It really did help. ALS is the pits.

  Well, SMA is, for the purposes of this brisk conversation, ALS, except it happens to babies. It’s not exactly the same thing. ALS progresses a lot faster, for one. But the thing to remember about SMA is that it’s always getting worse. From the minute that my mom realized that my legs couldn’t hold my weight, my SMA has gotten worse. There are things that I could do last year that I can’t do now. I was stronger when I was eleven than I am now. Every day this thing eats a little bit more of me.

  That’s a lot worse than I thought it was. So can you not move anything?

  SMA goes after you from the core and then spreads out. It’s like Evil CrossFit. The closer something is to my chest, my core, the more it’s affected. Parts of my body that are farther away from my core work a lot better than the rest of me. My left hand, for example, works pretty well: I can move around a keyboard, I can hold a spoon, I can make shadow puppets on the wall. But the closer you get to my middle, the less it works.

  I drive my chair using that left hand. One of the things I’ve noticed in the last few years is that if I don’t do something for a while, my body forgets how to do it, and that’s it, it’s over. Because my power chair controller is on the left side, my left hand is constantly busy, so it still works mostly fine. But my right hand, now that I don’t use it as much, is mostly done. This is one of the most annoying things about SMA. One day you wake up and are like, “Shit, I guess I can’t do that anymore.”

  And you already said you can’t talk. Why can’t you talk? Can you talk?

  Yeah, that’s another problem. I used to be able to speak real words and have real conversations. But a couple of weeks before I turned twenty-one, I fell out of bed and twisted my jaw. It wasn’t broken or anything, but it never felt right again, and I just never got the hang of it back. I can still talk, a little. But not well, and not comfortably enough that I want to put in the effort to say everything three times so people can maybe understand me. Travis and Marjani and my mom can make out what I’m trying to say, but few others can. I have a voice generator box on the iPad I attached to my chair, like Stephen Hawking. That is the only way I get to talk to strangers anymore. Well, along with getting yelled at for their planes being late.

  So you can only move your left hand and your mouth?

  My toes are wild. My toes are just going nuts right now.

  And you live by yourself?

  Yes. It’s not hard. For what it’s worth, from what I understand most dudes my age spend their entire days and nights doing exactly what I do anyway: staring at a computer, and sleeping. One might argue that history has bent itself over backward to meet me at this precise moment.

  Sure, I need some help. Marjani comes by in the mornings and at night, and there’s a series of overnight guys who are all super friendly and who are paid (underpaid, actually) by a Medicaid waiver program to come in and turn me over at night, because if I roll myself over the wrong way, I can’t get myself back. (They also have to make sure I’m still breathing.) It’s oddly intimate, some guy, either Charles or the other guy, Larry, Barry, maybe, whose only interaction is coming in my house, flipping me over like a pancake, and then leaving. Travis comes by for lunch a few times a week, and we hang out on weekends, but he’s my friend, not my caregiver.

  But life isn’t that complicated. I’ve lived by myself since I left Illinois. Medicaid, a bit of private insurance, and a GoFundMe Travis set up for me after an accident a few years ago pay for most of my caregivers and equipment. The airline job allows me to split the rent with my mom—college towns are nice and cheap. A lot of SMA kids, particularly boys, are babied by mothers who never leave their side. But my mom pushed me to be my own person, not to sit around obsessing over stuff I can’t do. As soon as I graduated from college I told her I wanted to move to Athens. Travis was here, but while it is great to have a close friend, he wasn’t the reason I did it. The weather’s beautiful, I’m a short jaunt from Atlanta, which has the best hospitals in the world, there’s college sports (and college girls) here, and there’s even good music. Plus, it’s a town where you can get away with not having a car if you don’t want one. A lot of people with SMA actually have cars, but who wants that headache? This is a town of sidewalks and walking students.

  I didn’t want to live with Mom forever, and even though I know she’d never admit it, she’s a lot happier not having to watch me 24/7 either. She visits every couple of months or so. She is proud of me. And I am proud of her. If I’m gonna live, I’m gonna live. Your assumption that living by myself is hard—that’s your assumption, not mine. Not everybody can do it. But I can.

  And it makes my mom happier. She put in her time. She loves me. I love her. But she wants me to live my life, and I want her to live hers. It’s the best gift we could give each other.

  That’s very sweet. But doesn’t she worry about you all the time?

  We text nearly every day. She’s my mom. But I want her to live her life. She has earned that right. She has always taken great care not to helicopter me, not to be one of those SMA moms who treat their kid like they’re an infant a decade into adulthood. This was hard on her when I was younger. So many moms, when they learn their kids have this disease, hold their kids even tighter, attempt to control their lives even more, to protect them from as much as they can, because they realize that in the biggest way, they cannot protect them at all. But Mom never did that. She made me push my own chair back when I could. She made me always feed myself. “Everybody’s life is hard,” she would say. “Your problems are your problems the way everybody else’s problems are their problems.”

  I’m a better person today because of it, and so is she. My disease didn’t take my mother down with it. She’s now enjoying the life she didn’t get to while she was raising me. I’m proud of her.

  How do you eat?

  Right now, I can move my head down low enough to my hand to feed myself, though only if I’m propped up at the right angle. It’s a lot easier to have Marjani or Travis help me out a little. Eventually, though, I’m probably going to need a tube. That’s going to suck.

  Um . . . how do you go to the bathroom?

  I’m afraid that requires a condom catheter most of the day, though that’s another example of something I won’t turn down help for. A condom catheter works the way you think it would. They even make Magnum sizes.

  But your brain is OK otherwise?

  You tell me. Does my brain seem OK to you? How would you feel about being asked about how your brain is?

  So, you can only move your left hand, your toes, and part of your mouth. Is that it? Is that all SMA does?

  If only. Remember: This is a progressive disease. The place it really goes after is your lungs. It makes sense, right? This is a disease that attacks your core muscles, and there aren’t more valuable core muscles than your lungs. My lung muscles are weak, and they’re never going to recover. This messes up my coughing reflex too, which means I’m in constant danger of choking on my own phlegm, which, I gotta say, is not how I hope it goes down. I have to breathe into a cough assist machine if I have any sort of breathing issue whatsoever, which is often. I’ve got it set up now so that I can just wheel myself over to it and stick my face in it. It’s sort of fun: it’s like a car wash.

  But the thing is, there’s a clock. You try to forget about the clock. But it is hard to forget about the clock.

  There are four types of SMA. There’s Type 1, which is the worst kind: that’s the one infants have, the one that almost always kills them by the time they’re two. SMA is the leading cause of death in infants, but I already got that one licked. Suck it, Type 1.

  Type 3 can be diagnosed later, but it affects your lungs less and can require you to use a wheelchair or walk with braces when you get older. Type 4 is adult-onset, and it messes with your arms and legs, to the poi
nt that you might end up using a wheelchair. But frankly, I’ve seen a lot of you people: half of you are one medical misstep away from a wheelchair anyway. It always feels like I’m behind you in line at Walmart a lot more often than you’re behind me in line at Walmart, I’ll put it that way.

  I’ve got Type 2, which is the most common kind. That’s the one you notice when you’re about a year old, the one that changes everything. Every little piece of gunk in your throat could kill you. You could fall over and never be able to get back up. Your body could just someday say it’s had enough. That happened to a buddy of mine a couple of years back. He was nineteen, and really into online gaming, fairly common for people with SMA. He used to message me with all these shady “coupons” to join some sort of gamer pyramid scheme, but he was a nice kid. His mom hovered over him too much, but it happens: not everyone’s as lucky as me in that regard. But then one day he went to bed, and he never woke up. He had all the newest medicine, he and his mom took care of him the best they could, but one day, his body just cried “Uncle” and sent him home to wherever.

  He was sort of rare. Most SMA Type 2s make it into their twenties, and some into our thirties. I know a guy who reached his fifties. But there are no guarantees. The clock is always there. I’m twenty-six years old. Is that too old? Am I average? Am I on borrowed time?